Advocacy
Mission
We empower patients with accurate, unbiased information and resources to support them physically and emotionally. We also provide tools that help them process that information and apply it to themselves—like firsthand accounts from other members of the community, interactive programming, and content that helps build a breast reconstruction vocabulary from the ground up.
Join us for a discussion on the Advancing Women’s Health Coverage Act. We’ll explore what this pending legislation means and why it matters for patients and providers.
The conversation, moderated by Dana Donofree (Founder and CEO of AnaOno, 16-year breast cancer survivor), will feature Alicia Billington, MD, PhD (ASPS Federal Chair, Legislative Advocacy Committee), Warren A. Ellsworth IV, MD (ASPS Board Vice President for Health Policy and Advocacy), and Ron Israeli, MD (Managing Director of BreastReconstruction.org).
Registered attendees will have the opportunity to submit questions before and during the event!
Event date and registration information to come based on legislative reintroduction with updated wording. FAQs on current and previously introducted legislation below. Keep checking this page for more updates!
Frequently Asked Questions
What is the Advancing Women’s Health Coverage Act (AWHCA)?
This legislation aims to update the Women’s Health and Cancer Rights Act of 1998 to improve access to breast reconstruction options and ensure protections for patients, including those considering preventive surgeries, breast-conserving procedures, and aesthetic flat closure. The AWHCA reflects updates informed by patient input, advocacy, and stakeholder discussions. It builds on prior legislation by clarifying protections, updating language, and incorporating lessons learned from patient experiences and advocacy efforts.
What was the original Women’s Health and Cancer Act (WHCRA) ? Why is it being updated?
WHCRA established a right to breast reconstruction coverage following mastectomy, representing a landmark victory in patient rights and cancer care. However, with time and the modernization of breast reconstruction and cancer care, gaps were identified—particularly for patients opting for breast-conserving surgeries. The AWHCA expands protections to ensure all patients’ choices are respected and accessible, while reaffirming coverage for both breast cancer patients and previvors.
How were patient voices incorporated?
The community was invited to share experiences and provide feedback. Insights from patients, providers, and advocacy organizations helped shape the protections included in the bill, ensuring that patients choosing flat closure are explicitly considered. Patient stories were critical in highlighting real-world challenges and informing language that is clear and actionable.
What protections are guaranteed under the updated bill?
With confidence, we know the following are protected:
- Reconstruction following lumpectomy
- Access to microsurgical breast reconstruction
- Surgical treatment for lymphedema
- Custom fabricated breast prostheses, including replacement of such prostheses
- Complex revision surgeries
- Preventive surgeries
Aesthetic flat closure
Patient choice and access to appropriate reconstruction options
What is advocacy and lobbying, and how does it work?
Advocacy is the process of supporting or promoting a cause to influence decisions and create change. In the context of the AWHCA, patient advocates, medical societies, and community members are working to ensure the needs and experiences of patients are heard by lawmakers.
Lobbying is a specific form of advocacy where individuals or groups communicate directly with legislators, their staff, or government agencies to influence policy or legislation. This can involve meetings, written communications, and providing expert testimony or data. Together, advocacy and lobbying help shape the language, scope, and implementation of laws like the AWHCA.
How does advocacy influence this legislation?
Legislative change often happens behind the scenes through discussions with stakeholders, medical societies, and patient advocates. Social media activism raises awareness, but detailed negotiations, analysis, and revisions are essential in shaping the final bill. Advocates provide real-world perspectives and patient stories, helping legislators understand the impact of policy decisions.
What should patients and community members do next?
There are several ways to support the effort:
- Share your personal experiences to help inform advocacy
- Stay informed through updates on the landing page
- Participate in grassroots outreach when the bill is reintroduced
- Educate others in your community about the protections included in the bill
When will updates be shared?
Key updates will be communicated after the ASPS stakeholder meeting on February 19, 2026, with a public informational session planned for mid-April 2026.
Advocacy Toolkit
Quality results start with informed patients who have the tools to speak up about their wants, needs, and concerns. We promote collaborative medical care by giving patients the information they need to become a part of their own breast reconstruction conversation. Learn how to advocate for yourself and the community.
Self-Advocacy and Insurance
Know Your Rights
The WHCRA of 1998 requires insurance to cover breast reconstruction for all patients who have undergone medically necessary mastectomies. Learn the ins and outs of the law, including how to advocate for coverage for your own procedures.
Make Your Voice Heard in the Exam Room
It’s important to listen to trusted medical providers, but it is just as important to make your voice heard. Learn about how to ask questions, share information, self-advocate, and build critical relationships with your medical team.
Caregiver Advocacy
Caregivers can be powerful advocates for the patients they support. Here are a few helpful tips when it comes to supporting your loved ones in the hospital or exam room:
- Get consent from your loved one on how and when they are comfortable with your intervention. The goal is to speak up for them when they can or do not wish to speak on their own, not to replace their voice with yours. Establish clear boundaries. This can even involve establishing a safe word or signal that tells you it’s time to step in or disengage.
- Ask a provider to leave you and your loved one for a few moments when they seem overwhelmed. This creates space for your loved one to think, process, or discuss what’s going on with you separately, without the pressure or perceived pressure of practitioner presence.
- Get consent from your loved one on how and when they are comfortable with your intervention. The goal is to speak up for them when they can or do not wish to speak on their own, not to replace their voice with yours. Establish clear boundaries. This can even involve establishing a safe word or signal that tells you it’s time to step in or disengage.
- Ask a provider to leave you and your loved one for a few moments when they seem overwhelmed. This creates space for your loved one to think, process, or discuss what’s going on with you separately, without the pressure or perceived pressure of practitioner presence.
- Be a sounding board and/or a voice. Help the person you are supporting gather their thoughts or refine questions both in and out of the exam room. Check in on whether they would like you to ask those questions on their behalf.
- Remember that as long as the patient wants you there, you are permitted in the exam room. Assert your right to provide support if your loved one is being denied your presence.
- Offer to ask questions and take notes on the patient’s behalf. It may not even occur to your loved one to ask this of you, but it can be extremely helpful.
- Educate yourself on procedures, recovery, and patient rights. The best advocates know as much as the patients for whom they care.
- Be a sounding board and/or a voice. Help the person you are supporting gather their thoughts or refine questions both in and out of the exam room. Check in on whether they would like you to ask those questions on their behalf.
- Remember that as long as the patient wants you there, you are permitted in the exam room. Assert your right to provide support if your loved one is being denied your presence.
- Offer to ask questions and take notes on the patient’s behalf. It may not even occur to your loved one to ask this of you, but it can be extremely helpful.
- Educate yourself on procedures, recovery, and patient rights. The best advocates know as much as the patients for whom they care.
Why do we need to expand the breast reconstruction conversation?
Read More
Who is breast reconstruction for?
Read More